Resources for PMD Families

Articles 

• Auditory Neuropathy in PMD

• Pelizaeus-Merzbacher Disease in Children: A Case Report

• Pelizaeus-Merzbacher Disease as a Cause of Early-Onset Developmental Delay: A Case Report

Best support sites on the web

• Global Genes Project

• The Morgan Project

• Pelizaeus Merzbacher Disease Support Group (U.K.)

• PMD Family Support Website

• ELA Deutschland

Information about PMD

• New Research Paper on the Caregiver Assessment of Pelizaeus-Merzbacher Disease

• Wayne State

• Leukodystrophy Resource Research

• European Leukodystrophy Association

• Australian Leukodystrophy Support Group

• Baylor Medical Center (Genetic Testing)

• NINDS (National Institute of Neurological Disorders and Stroke)

• Emedicine

• Jacob’s Ladder

• Gene Reviews

• UCSF Division of Neonatology

Facebook Communities

• PMD Family Support Facebook Page

• Loving Leo

• Team Everett

• Keeping up with Killian

• Archer’s World

• Aedan’s Little Wishes x

• Team Logan

• Believing in Augustus

• What Do You Do With A Miracle?

• Triumph For Tomas

• Camden’s Crusaders

• Savion’s Journey

• Hope 4 Liam

• Jones PMD Walk ‘n Roll

• Hope for Gabe

• Morgan’s Place

• The M.O.R.G.A.N. Project

• CURE PMD

• Valentin’s Day

Information about Leukodystrophies

• Hunters Hope

• Canavan Research Foundation

• NORD (National Organization for Rare Disorders)

• Leukodystrophy Alliance

• Global Leukodystrophy Initiative

Webinars

• Demystifying Clinical Trail Webinar Recording - April 29, 2025

  • Presentation PDF

  • IONIS PMD Program Updates Presentation PDF

  • IONIS Orbit Study Presentation PDF

• 2025 ULF Family Conference: PMD Foundation Community Meeting Webinar Recording